Diary of a Man with MS
Started in June 2016. Diary of a man with MS is a sporadic report of my life with MS. There are so many ups and downs, twists and turns. Sometimes I think it is worth telling other people about them.
Sometimes I want to keep the story to myself. None the less this whole website is a story of my life especially the tab ‘Living with MS’.
Diary of a man with MS
MS is another piece of baggage that can make the emotional roller-cosaster ride of life even more exciting or should I say daunting as well as frustrating.
An after thought
I have divided the diary section up into years that way it is easier to see what happens and when. I think this makes it more logical.
Unless I am careful this website is going to get too large and unwieldy. Maybe it is there already. Who knows?
Moving house, negotiating hurdles
Negotiating hurdles is one way to describe buying and selling the family home. We had lived in the house for 25 years, selling it was a difficult but obvious decision for many reasons. Negotiating hurdles When MS forced me into medical retirement in January 2012 me and MrsB knew it was only a matter of […]
Improving Cognitive Recovery
Do you sometimes feel wiped out, too exhausted to move? Recently I was in a shop discussing a new kitchen. The salesman was using computer software to design a new layout, I needed maximum concentration. After just ninety minutes I was mentally exhausted, just watching the possible options of what could go where had destroyed […]
Leg drop glues my foot to the floor
Leg drop glues my foot to the floor. You might think I am joking but I cannot lift my left leg off the ground without help. Its just like foot drop but it affects my thigh instead of my foot and the effect is just the same. Its difficult to imagine the problems until they […]
I’m a frequent faller, its a fact of life
I’m a frequent faller, its all because I have multiple sclerosis. My left leg is the culprit, I have drop foot and drop leg. It must have started sometime in the 1990’s, my diagnosis was in 1996. What started as an occasional trivial event now has a major impact on my life. At first the […]
Smouldering MS its my long-term condition
Smouldering MS, is my long-term condition, it is not a happy or relaxing disease. It can usually be endured with symptom management drugs and procedures. Its a complicated disease, hidden disabilities are a fact of life. A big problem is that no one has ever told me what the future would be when I was […]
Using a wheelchair, do I need L-plates
Using a wheelchair sounds really easy. Self propelling wheelchairs have much bigger rear wheels which have push-rims fitted to them. Now I can move the chair myself and be independent. Well, that all sounds super easy. Mind you there are problems being a wheelchair user that had not crossed my mind until I started to use […]
Do you know I have smouldering MS
I have smouldering MS. Multiple sclerosis first struck in 1972 when I was only 18. My bladder let me down on several occasions in the next 10 years. I didn’t speak to anyone about this problem, young men do not like going to the doctor. Big mistake, but I doubt if anyone would have made […]
Paristeen is another morning routine
Peristeen is another morning routine. This was not a random decision, Peristeen is vital for bowel management and it is now an essential part of my life. I do have a good healthy relationship with my MS but living with it can be tricky and life never stays still. If you have never heard of […]
Core muscles were weak so I used a wobble cushion
My core muscles were weak, its something I only noticed a few weeks ago, Getting out of bed not been easy for several years, its something everyone takes for granted. Just recently it had suddenly turned into a terrible struggle. I’ve got enough problems already without worrying about new ones. Now was the obvious time […]
Variable height saddle stool to move around in the kitchen
I use a saddle stool to move around in the kitchen, prepare food and cook. It makes my life in the kitchen so much easier. I cannot walk or stand unaided because of multiple sclerosis. Now I can cook, a hobby that I enjoy. The stool is like a horse’s saddle on wheels. You could […]
Feet are made for standing
Feet are made for standing, its something people take for granted. OK I admit that walking, running and jumping also involve feet but standing on them is a basic function. “Learn to stand on your own two feet” and “Rushed off your feet” are two common phrases that involve being on your feet. My mobility […]
Advanced MS and sitting down exercises
Advanced MS and exercise are not natural bedfellows. None the less exercise can help us all to manage common MS symptoms such as fatigue, muscle spasms or balance. When I was a child my parents were always saying to me, “Go out side and take some exercise” and it was so easy. Those were happy […]
Poor balance and mobility makes walking difficult
I have poor balance and mobility so I use a mobility scooter. I remember in 2012 when medical retirement arrived I could easily lift my mobility scooter onto a train and I did not need a walking stick either. Those were carefree days, now long gone. Nobody told me how my life would change in […]
Only another invisible disability
An invisible disability is a problem for people living with advanced MS and you can easily have several. I could go so far as to call them as the lowest form of pond life. Something unexpected starts happening, initially its very slightly annoying and is quickly dismissed as a passing glitch. You hope the glitch […]
Do we really need a car in London?
Do we really need a car now we are living in London? Our car is a 14 year old 2 litre diesel VW Passat estate, far too big for us in London. Its not ULEZ compliant (Ultra Low Emission Zone), much too old. Its starting to cost more every time it has an MOT. Also […]
A short visit to Woburn Centre Parcs
I last visited Centre Parcs when all 3 of our children were under 10, over thirty years ago. My diagnosis of multiple sclerosis was at least 10 years into the future. Now our two daughters are married, and each has a baby son and I am living with advanced multiple sclerosis. A visit to Centre […]
3 traumatic injuries to me
Visits to hospital Multiple Sclerosis was the the one factor that joins these 3 traumatic injuries together. None of them could be described as fun but hey, I survived. Sepsis December 2013 I have used intermittent self-catheterisation to empty my bladder since 2005. this visit to hospital occurred in 2013. I had just received a […]
My life with MS and invisible disabilities
My life with MS is turning into a balancing act. Not the high-wire type of balance, just making sure I don’t do two things simultaneously. My life is now just one job at a time, no more walking and talking. Invisible disabilities rule plus they control my life. Nobody knows I have invisible disabilities unless […]
A stressful house move
Downsizing has definitely made this a very stressful house move. Everything in our lives was going to change. Advanced MS and its disabilities, we are both physically past our prime and living in a house with stairs meant our time was up. Throughout our married life we have accumulated possessions. Furniture, books, clothes, ornaments and […]
Time to move into a more suitable property
Me and MrsB decided its time to move into a more suitable property. Multiple sclerosis and age have finally caught up with me. Our Victorian five bedroomed terraced house is beautiful, but not at all practical. The local council built a wet room a few years ago. It made washing and going to the loo […]
Downsize to a flat, the story has just started
We live in a Victorian terraced house. Downsize to a flat is our next step but the challenges have only just begun. We moved into this house over 20 years ago and its now time to move on and start a new chapter in our lives. The children grew up here and now lead independent […]
My own cannabis experiment
I’ve had MS since 1972 and it has had a huge impact on life. It now affects me in every which way. The wonderful NHS prescribes drugs that will ease my symptoms so every day I have to take a cocktail of pills. Time to look at other solutions. I decided to do my own cannabis experiment. […]
I forget what I was going to tell you
I’ve had too many ideas on blogs to write over the last few months. Some frustrations, some positive experiences and even some actual thoughts. But when I start to write a blog there is a crisis that needs my full attention then I forget what I was going to tell you. I’m ten Recently this […]
Thoughts on buying a mobility scooter
You are disabled and your mobility is getting worse. Now you realise you can no longer comfortably walk very far so you need to think on this. Distance is not the only problem, speed, balance and carrying also come into the equation. Thoughts turn to buying a mobility scooter. Original mobility scooter They first appeared […]
What has happened to my energy?
What has happened to my energy? Back in the day, I had so much get up and go. I had a 9 – 5 job, 3 young children, a garden to look after and numerous other responsibilities. From about 2005 the wheels began to come off the car. I gradually had less energy to fit […]
A UTI with advanced multiple sclerosis is no fun
It crept up on me very slowly, just think of a lion stalking its prey. Initially, I was blissfully unaware that I had an infection. Looking back with the benefit of hindsight I can see how I slowly deteriorated followed by a slow recovery. A urinary tract infection or UTI with advanced multiple sclerosis is […]
My interview on Tring Today – Friday 18 February
Bored on Friday 18th at lunch time? Why not tune into Tring radio on Friday between 12 and 1 and listen to my interview as a guest on Tring Today. Tring Radio is a local community radio station run entirely by volunteers. Two people started the station two years ago at the start of the […]
Mobility scooter needs a bus permit
In late July 2017 I was getting onto a bus at High Wycombe with my mobility scooter. The Arriva bus driver said “The mobility scooter needs a bus permit. Can I see it” Arriva are responsible for running all the buses in the towns close to where I live. I have to use the buses […]
Shopping in a wheelchair is a challenge
If you find walking easy then I am going to issue a challenge, go shopping in a wheelchair. Before you leave don’t forget to tie your legs together. You must go out on your own and don’t forget a shopping list or shopping bag. You will need some cash, credit cards and your mobile phone. […]
With MS I now move like a tortoise slow but steady
As I move forward through time, ticking off the years, multiple sclerosis has an ever growing impact upon my life. Nowadays I must always have one hand holding onto something firm and stable. The happy days of nipping upstairs or popping next door are history. Now everything must be carefully considered. I now move like […]
I’m a lucky guy Fampridine works for me
I take Fampridine and use an FES or Functional Electrical Stimulator, they both improve my quality of life. I can only walk with a rollator and it is agonisingly slow. Without them I would have to use a wheelchair. OK. my left leg is useless courtesy MS but I do have an excellent right leg. […]
Table topics competition at Toastmasters floors me
I have been a member of Toastmasters since 2012. It was September 2017 and I had entered a national competition. Either give a prepared humorous speech or talk on an unprepared subject. I had reached the second round of the unprepared speech, the table topics competition. Table Topics competition Make an impromptu unrehearsed speech on […]
Now I’m a volunteer with Tring radio
I have decided to volunteer with Tring Radio. Starting off with a little role. I had a sneaky feeling that when I completed my sponsored #Walk4onehour in September I was going to feel lost. A new challenge was required and I was right. The sponsored walk had been a wonderful success. It had concentrated my […]
Managing MS fatigue, an overwhelming inability to continue
Managing MS fatigue is a long story. As recently as 1995 I played badminton singles in the local sports centre, after just half an hour I was physically exhausted and very sweaty. I’ve now hung up my badminton racket, personally I blame multiple sclerosis,. I still suffer intense exhaustion but no sweating. Walking very slowly […]
The day I walk for one hour
Its a wonderful September day. Warm enough to wear shorts but not so hot to become a shade seeking missile. Three months of preparation and I had one hour to prove that I could do it. Yup, Sunday 13th September was the day when I was going to walk for one hour and you had […]
I’m planning a sponsored walk #Walk4onehour
Lockdown and my world is changing. Still no one knows anything about the future. I knew I had to get out of the house and take some exercise to maintain my mental health plus I needed a goal. A sponsored walk. Perhaps I could organise it and do it, this would tick so many boxes. […]
